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ORDR Co-Sponsored Conferences

The Spectrum of Caregiving and Palliative Care in Rare Diseases,
Tuesday, June 09, 2015 Location: Building 31, 6C, Room 6,
Bethesda,
MD
Description: The findings and recommendations resulting from the Workshop will provide guidance to the extramural community as well as to NINR and other Institutes, Offices (e.g., ORDR), and agencies in developing strategies for advancing the science of palliative care and caregiving in rare disease and research programs. It is anticipated that a funding opportunity announcement will result from the Workshop.

American Society of Gene & Cell Therapy (ASGCT) 18th Annual Meeting,
Wednesday, May 13, 2015 -
Saturday, May 16, 2015 Location:
New Orleans,
LA
Description: From our plenary lectures, this year to be given by Drs. Steven
Rosenberg and Anthony Atala, to our 19 scientific symposia featuring
invited speakers from across our discipline, to our nightly abstract
poster receptions, where the majority of the over 700 abstracts
submitted to the Annual Meeting are presented, the ASGCT Annual Meeting
is certain to be the premiere scientific meeting in our field.

RDCRN 3rd Conference on Clinical Research for Rare Diseases,
Tuesday, October 02, 2012 Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center,
Rockville,
MD
Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: direct instruction of trainees and new investigators in rare disease research methodology; development of a reusable curriculum/syllabus on rare disease research methodology; and stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases.

Society for Inherited Metabolic Disorders Annual Meeting,
Saturday, August 29, 2009 -
Wednesday, September 02, 2009 Location: Manchester Grand Hyatt,
San Diego,
CA
Description: The rarity, uniqueness, variability, and the need for an individual approach to treatment make inborn errors of metabolism a very complicated subspecialty. As such, most geneticists do not know these disorders well and only very specialized metabolic centers deal with them. For the United States to remain preeminent in both clinical and research aspects of inborn errors of metabolism, it is critical that young physicians and scientists be attracted to and remain in this important field.

Other Names for this Disease

GPI deficiency

Infantile cellular interstitial pneumonitis

PIG

Pulmonary interstitial glycogenosis

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